NO DATA NO MORE! A Manifesto to Align HIV Prevention Research with Trans and Gender-Diverse Realities

July 19, 2021

Worldwide, trans and gender-diverse (TGD) people face a highly disproportionate burden of HIV but are frequently and often systematically left out of HIV prevention research and responses. That ongoing exclusion is a major barrier to efforts to end the global HIV pandemic, according to No Data No More, a new HIV prevention manifesto written by TGD advocates from South Africa, Europe and the United States, with support and solidarity from AVAC.

No Data No More: Manifesto to Align HIV Prevention Research with Trans and Gender Diverse Realities takes aim at an achilles heel in the global response to HIV: the neglect of trans and gender-diverse communities. Trans women bear a disproportionate burden of HIV globally with 19 percent living with HIV—49 times greater than the general population. HIV in trans men is woefully underreported and understudied and the absence of data leads to a false assumption that they bear little to no burden of the virus. Gender nonbinary people face even greater underrepresentation in HIV surveillance and research.

No Data No More analyzes how TGD communities are left out of HIV prevention research and responses through structural barriers such as discriminatory attitudes and punitive laws, non-inclusive language, failure to recognize the diverse and unique identities of different members of TGD communities and a lack of understanding of the role of gender-affirming hormone therapy (GAHT) in TGD health. And this manifesto provides a vision for a course-correction.

Addressing researchers, implementers, funders and advocates, highlights of manifesto demands include:

  • Inclusion of the full range of the gender spectrum in clinical trials, with an emphasis on trans men.
  • Efficacy and safety questions regarding on-demand oral PrEP for trans people on GAHT are resolved.
  • Local research sites funded to recruit TGD participants and to follow the Good Participatory Practice.
  • Guidelines, which must involve engaging with the local LGBTQ community, including transgender-led organizations.

No Data No More offers practical and essential priorities to ensure viable HIV interventions for TGD people. We encourage you to engage with these important insights, because the future must include peer-led HIV prevention research with true ownership and acceptability in TGD communities.

Watch this space for details on an upcoming webinar. And for more information and to advocate for TGD inclusion in HIV research, go here